Old 12-27-2011, 08:41 AM #1 (permalink)
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Default My bride takes "living with ALS" to a new level...

I tell ya, the woman is a saint! With my bulbar onset, right now most of my symptoms are speech-related, with only a little short-windedness (is that even a word?!?).

We're not giving up on life but are living it to the fullest, still there are some things I have quietly put aside as 'not prcatical', either financially or as the best use of my time. One of those was the decision not to purchase another motorcycle, although physically I am still able to ride if I want to. So imagine my surprsie when the Mrs. delivers a Harley Davidson Electra Glide for Christmas! She says "Ride it until you can't, and enjoy every minute of it."

I was already hopelessly in love with this woman, where do I take it from here?!?

P.S. Any Raleigh area PALS who want a ride in the side car need only to holler!
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Old 12-27-2011, 08:57 AM #2 (permalink)
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Default Re: My bride takes "living with ALS" to a new level...

Quote:
Originally Posted by Jeff Long View Post
I tell ya, the woman is a saint! With my bulbar onset, right now most of my symptoms are speech-related, with only a little short-windedness

She says "Ride it until you can't, and enjoy every minute of it.
Jeff you are indeed a lucky man. I too enjoy a love of motorcycling but with limb onset the first thing I had to give up was the motorcycle. Occasionally I can still get a good ride in when I'm asleep and dreaming but I am now in a wheel chair most of the time and unable to persue any of the activities that once lit my fire. I hope that you have many miles ahead of you.

Bill
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Old 12-27-2011, 08:57 AM #3 (permalink)
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Default Re: My bride takes "living with ALS" to a new level...

Jeff your Mrs sounds as amazing as mine. How is that two grunts could have married up so much? You make me want to come to Raleigh so I can ride in the side car and show up at the next HD rally both of us displaying our short-windedness, it is a word now hahaha. Lets all make a news Years resolution to live as much as we can, and experience life, It doesn't take any effort to be depressed about this disease, or to let it win and pull us down, so we all have work hard to surprise our CALS and our selves as we help them live their life too in 2012.
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Old 12-27-2011, 09:38 AM #4 (permalink)
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Default Re: My bride takes "living with ALS" to a new level...

EGBAR,
I can always swing through on my way to Bike Week in Daytona! My son lives in Daytona Beach, so lodging is free. You say the word, then listen for the loud rumble. We'd make a helluva sight at Daytona, sucking air and shuffling around, but I'm going anyway!
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Old 12-27-2011, 10:29 AM #5 (permalink)
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Default Re: My bride takes "living with ALS" to a new level...

This is fantastic Jeff! Independence for as long as possible is my goal! Go for it!
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Old 12-27-2011, 10:38 AM #6 (permalink)
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Default Re: My bride takes "living with ALS" to a new level...

I'd consider training wheels if it added to the time I can be independent! I received your PM over the holidays, thanks so very much.
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Old 12-27-2011, 11:45 AM #7 (permalink)
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Default Re: My bride takes "living with ALS" to a new level...

Jeff,
That is SO awesome! Be careful! My husband might be going to bike week. He has a Harley too. You are a lucky man!
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Old 12-27-2011, 01:57 PM #8 (permalink)
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Default Re: My bride takes "living with ALS" to a new level...

Wow... what a fantastic lady! Though I could tell that about her when we met at the ALS support group Have fun on it!
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Old 12-27-2011, 04:44 PM #9 (permalink)
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Default Re: My bride takes "living with ALS" to a new level...

Okay - Jeff - your wife is excellento! My Marine loves his bike too and will ride until he no longer can. He has a 1992 Tour Glide. So when are the four of us going for a ride and a lunch date?

Last edited by rcharlton : 12-27-2011 at 10:14 PM
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Old 12-28-2011, 02:24 PM #10 (permalink)
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Thumbs up Re: My bride takes "living with ALS" to a new level...

Jeff, your post put a big smile on my face. I am very happy for you!
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Old 12-30-2011, 12:50 AM #11 (permalink)
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Default Re: My bride takes "living with ALS" to a new level...

My dad had Bulbar. One year before he passed we took a few days down Ocean City Maryland for Dick Gelfman (Balto thing HON) ride for breast cancer. It broke his heart when he could not hold up "Cherry Girl" any more. I wish I could have gotten him a trike.
That was a memory of a life time when it started pouring down rain and we were drenched. We were so cold but laughed for hours as we shivered. Thanks for sparking the memory, have a blast, your wifey is an angel
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